[Patient Interview] Living with UC: Molly’s Story
Molly is a 20-year-old university student, who was diagnosed with ulcerative colitis (UC) at the age of 15.
When Molly saw her first symptom, she did not talk to anyone about it because it was embarrassing,
but now she wants to break taboo around the disease as she shares her experiences with UC.
Meet Molly sharing her encouraging story and message of hope for patients living with UC.
Please could you tell us about yourself and how you were diagnosed with ulcerative colitis?
Hi, I'm Molly and I'm a UC patient. I'm 20 and I've lived with UC for five years now.
So I was diagnosed with UC when I was 15. The first symptom I actually noticed was blood in my stool and I actually didn't think anything of it for a few months and didn't really mention it to anyone. It was a bit of a taboo topic for a 15 year old to talk to anyone about. It’s a bit embarrassing.
And then it wasn't until Christmas of that year when people started asking me about the weight loss and if I was okay. And then a few months after that, I was sent into hospital by my GP and ended up staying in hospital for 3 months and having numerous checks. And it wasn't until I got my colonoscopy and an endoscopy when I was finally diagnosed with UC.
Can you describe your experience as an ulcerative colitis patient since diagnosis?
I've been on numerous different medications since diagnosis. At the very start I was on 10 tablets a day at one point, none of which were working. I was really struggling on taking them or even keeping them down whenever I took them.
I really thought nothing was ever going to get me better and I was becoming really depressed within myself and very isolated. That was a very tricky time for me, I really struggled.
I was just going on a further downwards path and it wasn't until around that time when I saw a psychologist and finally kind of was able to grieve my old life that I had without UC and accept this new life with UC, when I was able to finally find a medication that actually worked for me.
How has the option of at-home treatment impacted your life?
Having the option of at-home treatment has impacted my life for the complete better. It has given me a complete new lease of life and has enabled me to do things that I would never be able to do before. I was able to overcome this original flare, get rid of my fatigue and be able to actually get out of bed every day and feel good with myself again.
Prior to the at-home treatment I was on intravenous injections which I’d have to go into hospital for every 6 to 8 weeks and I've just returned from an 8 week holiday to Thailand, which I never would have been able to do if I was still on this intravenous medication because it wouldn’t fit the timeframe of the medication when needed.
So being able to have this at home treatment has enabled me to take control of my own life and my own medication, and in a way has made me feel so much more in control of my UC as well.
It's allowed me to go away for university, which I never thought I'd be able to do. I thought I'd have to be closer to home and actually to take my medication into my own terms and be able to administer it myself has really impacted me psychologically for the better.
How have you come to manage the challenges of living with ulcerative colitis?
For me, the most physically challenging thing about living with UC is the fatigue that comes alongside it. And I think actually mentally the fatigue really affects me as well because of this having to say no to social interactions sometimes. But I've come to accept that actually it's okay to take a day when a day is needed.
Surrounding yourself with people who understand is really important. All my close friends, they completely get when I need to take a day or when I'm sick or having a mini flare and understand that actually I just need time to recover from that, and I will be myself again and that I will be okay.
What message would you like to give to others living with ulcerative colitis?
I think one of the main messages that I would like to get out there and portray to people, whether newly diagnosed or have had UC for a long time, is that it's okay not to be okay some days and that there is a light at the end of the tunnel, you won't feel like this forever, and that it's okay to reach out for help when you feel like you need it.
There is nothing to be ashamed of and there are always people out there who are able to help you overcome the challenges that UC brings.